Tuesday, November 30, 2010

Yesterday I had a calendar mix-up. I looked at an appointment card I had and it said Monday, 12/1 10 a.m. Problem was that it was Monday but the date was 11/29. So which was right – was it indeed Monday or was the appointment Wednesday, 12/1? I called but only got voice mail. I decided it was best to drive there to just be safe. My schedule was sorta flexible and a fifteen minute drive to the east side wouldn’t be too disruptive.

As I drove across the Morrison Bridge to the east, I saw Mount Hood glowing like a polished trophy, cast in shadows of blushing silver. To the north, Mt. Saint Helens popped like a dreamy bundt cake swirled with velvety white frosting. I felt my heart bump against my chest. How lucky I was to see this. Usually late November means that we are socked in with heavy gray clouds, smudged fog and the mountains seem lost to us until late spring. But not this day and I was surprised and happy to be able to catch this seldom seen glimpse. I felt lucky. Like this was a good omen.

At the same time I was listening to a song that I was really enjoying. When the mountains came into my view the words, “I am not the mistakes I carry. I am who I am” sang out from the speakers. It was a strange and serendipitous moment for me. I felt tears in my eyes and my fingers clenched the steering wheel. I have been trudging along these days, feeling overwhelmed and hurried through the holiday madness, watching the slippery sand free-fall through the timer and feeling panicked. And yet, in that moment, time stood still, worries melted and I felt real joy. As if something greater than my small life was saying,

“Slow down. Hang on. Look East. Look North. Listen to the words. There is greatness and beauty in your life and you are not your failures.”

I felt a stirring in my bones, maybe in my soul that this was a moment to be had, an instant to take pause and breathe – to bask in the undisturbed peace that exists in the natural world and to let all the synthetic noise and clatter of the holidays fall silent.

Sometimes I think I might be losing my mind. I am always trying to make sense out of this life of mine. Why things are the way they are. And I can’t help but to trust that grace and beauty and hope are within the distance of my tired, wrinkled fingers. That I can feel them like I can feel my boys heartbeats when they fall fast asleep in my arms.

And I don’t know what that “true” meaning holds for me. I do know that it has something to do with my children, especially Sean. As much as it has been a rough road with Sean, it has been one that has stretched my mind and heart like pulled taffy. He continues to shake me out of my comfort zone of a one dimensional life and pushes me into an ocean of tumble and salt and wonder. I don’t know if I would be as happy and fulfilled as I am with him as I would be without him. That means something, when I consider all the heartache and break we have had raising an autistic child. He is the sweet and sour in our lives. He makes the good days better because we have lived through the rough days and have crawled out on skinned knees and hearts.

When I arrived at the office I was told my appointment was indeed, Wednesday and not Monday. I didn’t mind though. I wasted “valuable” time but what I saw and what crept into my mind and heart was worth it. If I didn’t check on the appointment I wouldn’t have travelled in that direction, to the forgiving east and the vast north, and I wouldn’t have seen the muscle of mountains and shimmering sunlight tickling the horizon. I wouldn’t have heard the song that told me to let go of my mistakes, that they are not who I am but rather a small part of my history. I wouldn’t remember how lucky I am to have all that I have. I am lucky. Despite what others may think of a mother with an autistic child. I am one lucky person.

Monday, November 22, 2010

Last Sunday we took Sean to see Santa. This time we did it differently. No giant shopping mall where the line snakes for miles, weaving through ropes with families pressed against other children and parents anxiously awaiting their turns to tell the big guy in the red suit what they would like for Christmas. We have done this in the past. Sean has some really good strengths. Standing in a long line, packed like sardines, waiting patiently is not one of them. Usually my husband and I would take turns chasing him under the red velvet ropes, catching him mid-hop and pulling him back into line as he threw elbows and arched his back. We were the family in line that seemed to be standing on an active earthquake fault line – swaying into others, my hips and shoulders brushing into moms and dads and my constant apologies falling flat. It got to be such a stressful tradition that we were ready to say the heck with it.

Luckily, we got word of a Santa that was going to be available to kids with disabilities, including autism. This would have to be one understanding, patient, tolerant Santa. The thing with autism is that if you have seen one child with autism then you have seen one child with autism. Autistic children are like delicate snowflakes, similar and yet no two are ever the same. Who is to say how each child may react? Often their reactions differ greatly.

The clinical director, Kathi Calouri and the program director, Eric Hamblen at PACE Place in Beaverton, Oregon (http://www.paceplaceinc.com/) arranged to have a Santa for their many clients who, year after year, have struggled with taking their disabled child/children to see Santa – a typical tradition that most take for granted. In fact, most families with children who have autism don’t even bother. The unpredictability coupled with the lack of understanding and tolerance can make a holiday must-do into a CHRISTMAS NIGHTMARE. It’s no fun when your child hops around Santa and stims, or bites Santa or screams at the elf and the others in line. It’s even harder when your child is not a feisty three or four year old but a growing eight or nine year old. As the parents of these children we can see the fright building in their eyes and the tiredness in their bodies from trying to hold still in the noise and crowd. We are constantly preparing for the impending storms that hit hard while out in public.

We paid for a private fifteen minute time slot to bring Sean into PACE Place. Kathi and Eric were on hand, along with a photographer, a wonderfully charming Santa and an Elf. There was no line, no others milling around waiting for their turns and my child’s excited hopping and yelping was welcomed. We had the opportunity to take a family picture but since my oldest son was at a hockey game and I came in sweat pants and a hair that was in desperate need of a brush, we decided to just get the pictures with Sean. The photographer took a dozen pictures while Sean talked to Santa and hugged him repeatedly. There was no rush, no uncomfortable glances among the others and no heartache for my husband and me. In fact, we were quite happy to see our boy participate in an activity that was slowly becoming impossible to accomplish. Our handsome boy was all smiles enveloped in the arms of Santa and whispering that he would like a Jakers DVD for Christmas.

I am thankful that there are people in this world that share their heart and compassion with families like us – that understand how tricky and lonely the path can be that we must travel and are happy to offer an elbow and share with us a knowing smile. As we drove away, my husband said,

“I’m glad you signed Sean up for that. It’s good to see him so happy.”

Autism makes life a lot tougher for all of us. But it also makes moments like these more beautiful and tender -- a glossy photograph capturing my boy’s smile and happiness while being held in the arms of a kind Santa is one of the most precious gifts.

Saturday, November 13, 2010

The other day, after picking up baseball cards and missing socks and Halloween candy wrappers from my oldest son’s bedroom floor, I felt a thwack, like the give of a folding chair collapsing. Then I realized that I couldn’t stand straight, my back in the shape of a lower case r, hung over the bottom half of my body. It had felt like a giant punch landed on my lower back and tailbone. Crap. I don’t have time for this. I went to my knees and rolled over onto my back trying to stretch out my spinal column, arms and legs. Then I turned over and did the sleeping child yoga pose. Back to my feet and I could barely stand. I scurried around trying to complete a few more tasks before the carpet cleaning guy was coming. I couldn’t cancel – the rugs had been so neglected that I was quite sure I could start a plague from my kids rolling around on the floor. I pushed the vacuum cleaner, each tug a pierce jab to my back and tried to pick up a couple of chairs and an ironing board and place them on the tiled kitchen floor.

I knew how it started. The past weekend we had gone down to Corvallis for Sean’s soccer match. It was the largest gathering of soccer teams for the Special Olympics of Oregon. Sean was ready to go in his cleats, shin guards and a soccer shirt that fit him like an evening gown – if only he had the right belt and matching hand bag. He is by far the littlest on his team and was one of the youngest at the tournament. He had three games which his team managed to win two and Sean had three goals – unfortunately all goals were scored against his own goalie. Sean didn’t seem to mind as he rolled on the ground, hopped, cheered and clapped – I was certain he’d get a flag for over-celebration but didn’t know if it would count since the other team was already being rewarded by Sean’s misfires.

In between matches Sean would run up to me at full speed, then vaulting his strong, muscled body toward my open arms and I’d catch and spin him. My oldest wanted to get in on the fun and nearly mowed me over. We decided that he could hop on my back instead. So between entertaining Sean and trying to accommodate my growing oldest son by piggy back rides, I had pushed my back to the brink. It only took a few bend overs (BEND AT THE KNEES! I always forget this) the following week to find myself crumpled like a question mark.

I shuffled around the house, greeted the carpet cleaner guy as he surveyed the carpets.

“When was the last time you had these cleaned?” he looked up at me after finishing up in Sean’s room, the worst swag of carpeting in the house.

“A year ago.”

“Really?”

“Yeah. The boys drag everything in the house and with all the rain and pine needles it gets pretty bad.”

“Maybe you should do it every six months,” he said, checking off a million recommendations --- enzymes, extra spot removal, scotch guard...

“Yes, definitely,” I said crouched over like I was staring intently at my own belly button.

In the evening, I made it to my writing class and picked up my oldest from his hockey practice. All and all I muscled through, although my oldest looked at me strangely and asked, “Why are you walking like that?”

I thought of some smart ass comments, like, “trying to mix things up,” or “you don’t think this makes me look younger?”. Realizing it would be missed on him I said, “I hurt my back.”

“How?” he asked almost in disbelief. He might as well throw in, “because God knows you don’t do ANYTHING.”

“If you must know, part of it was from lugging you and Sean around at the soccer tournament. You guys are too big to be jumping on me. And I was cleaning up the garbage on your floor. Is it really that hard to put socks down the laundry chute and to throw out wrappers?”

“I’m sorry,” he said, and he did feel bad seeing me hunched over the steering wheel.

Luckily, today I am feeling much better. The back is stiff but at least I look closer to a forty year old than an eighty year old. I’ve done stretches, filled up a water bottle with hot water every night, took Aleve and slept one night on the floor (my husband suggested this but I think he just wanted the whole bed to himself because I felt pretty stiff the next day.)

It scared me though. What would I do if I was debilitated and couldn’t do the things that have to be done? Sean doesn’t have the capacity to understand that my back had gone out. He has needs and he is short on patience and understanding – it’s the nature of autism. My oldest has a schedule like a CEO of a major corporation. There are hockey games, practices, clinics and school, choir, homework, piano lessons, science projects, friends and birthday parties. Seriously, there are times I feel like the activities director on a Disneyland Cruise ship. I have to be able to focus and react even though the years are ticking by and the paint is starting to chip.

So what if I did my college term papers with a Smith-Corona typewriter (the last two years we did have computer labs and I owned a couple of FLOPPY discs and printed out my assignments on a charming dot matrix printer); or the current kid-sitter who was born while I was in my early twenties living it up in Chicago. Yes I can get directions from an actual road map and dial a rotary phone and open my garage with my bare hands and drive a stick shift – these are feats my kids will never know as they push buttons, make voice commands and download information to their I-Pods and GPS devices. I didn’t even hold back on the middle school kids who showed up on Halloween night as “80’s girls”, big hair, tights and blousy shirts with large belts and lots of pink lipstick and sparkling eye shadow. I gave them the good stuff, the Reese Cups and Snickers. Secretly I felt really old and somewhat ridiculed and wanted to throw my head into my son’s pillowcase of treats and eat my way to the bottom but I managed to stop myself. It helped that he was in the room and that at first glance all I could see peeking out of his bag were Sour Skittles and an unraveling Tootsie Roll. There’s no saying what could have happened if I was faced with an Almond Joy and Kit Kat.

But I digress. We are all growing older. Each day. I can’t stop it but I can try to make the most of it. I just have to remember the boys are getting big and that I can’t be a human trampoline for them. Other than that, I’ll try to re-commit to yoga and continue to take my vitamins. And to laugh. Somehow that makes everything a lot easier.

About Me

Currently, I am fulfilling the duties of Mom. Before this role I used to write and read poetry at the Poetry Slams at the Green Mill in Chicago and other cafes in the city. I am trying to find my way back to that, trying to incorporate this journey that I am on with my love of words and poetry.
I have two great boys, an equally great husband and a fairly lazy, unenthused cat. Add to that, I have lots of good, creative friends (one that manages to get me to go to the Shakespeare fest in Ashland,OR every year!!) and wonderful parents and siblings.
I am trying to learn to live in the moment, to jump in without too much analyzing and thought. This is new to me as I have always been considered a "worry wart". Wish me luck.

Helpful Resources

The Mom Blogs

Mt. Hood

Autism Study: Simons Simplex Collection Project

What is the purpose of this study?The Simons Simplex Collection (SSC) is focused on families with just one child with autism, called simplex families, which will provide insight into the most common and unexplained form of autism. This comes at an exciting time in history, in which breakthroughs in gene mapping, advancement of high-tech tools, and the latest brain research present a unique opportunity for progress.

Whom should I contact to get more information?Emily Champoux, Project CoordinatorToll free: 1-800-994-9701 or 206-616-2889 Email: emchamp1@u.washington.eduAdditional SSC information available at: http://depts.washington.edu/uwautism/research/simonssimplexproject.html